"A less than satisfactory experience"

We have been under the pre-school Child Development Clinic between Dungannon and Lurgan for almost 4 years. Our experience overall has been less than satisfactory. 

We were discharged from neonatal pre-covid and unfortunately services were stopped then. However we had no phone calls, no video calls, nothing for 7 months. I feel this should have been made a priority as many other private therapists were able to change over to video.

In my view, the first Speech and Language therapist (SLT) we had was awful. We found them negative, hurtful, unhelpful, and they didn't even follow up any appointments with us for 18 months when we were luckily given a new SLT who has been a bit better.

Overall, speech and language has been our biggest disappointment. Appointments were few and far between with no advice or guidance, lack of follow up, needing to be chased to see us and overall just a negative experience. From speaking with other parents, this is an issue seen by everyone.

Our last SLT was lovely, but it was very obvious to me that they have no idea what to do to help children like my child and seemingly found it easier to give up rather than attempt anything. In 4 years we have had about 3 appointments, which I find completely unacceptable. 

I also found our first physio to be horrible, rude, condescending and never really helped us at all. They constantly made us feel inferior and berated us for ever asking questions. They made us feel awful for looking elsewhere for help, while simultaneously not doing any hands on work with our child. They told me to stop speaking to other parents, to not discuss our care with anyone. We employed a private physio who wanted to collaborate and was told to back off.

Everything we asked for was delayed, refused for no reason, or we were given milestones to reach that I don't feel were necessary. It was incredibly stressful and upsetting. We've been through 4 physios and luckily our last one was pretty good. They did some hands on work and helped in any way I asked. It was unfortunate that the sessions were only every two months or so, as I feel my child would have benefitted with far more frequent input.

It's obvious to me the staff are too few and have too large a caseload. Unfortunately I feel this is making it very neglectful as children aren't getting the input they need or deserve. I believe it's crucial this is funded and improved urgently.

Our OT was always pretty good. They were quick to respond, helpful and despite not doing much hands on stuff, we did find them approachable and easy to reach. They were willing to meet us any time we asked and was quite quick to organise things. They were on the ball with equipment and helped us immensely with planning our child's future home. 

We have been through 4 PTs and only one has been pretty good. The rest barely touched my child and I found them frustratingly unhelpful. Whenever I raised concerns, I never felt we were listened to or anything was done to help. I feel being met with pity just isn't good enough when nothing is being done to actually help the child.

We have finally reached a fairly good team of therapists, but are sadly losing them because my child is starting school. I am incredibly anxious and worried about what sort of therapists we will have when we start school, as our experiences and feedback from other families is less than encouraging. 

I found it very disheartening and am sad to say our experience has made me incredibly wary of professionals and I experience severe anxiety because of our interactions.

I think this service needs to be looked into properly and from a feedback point of view, I believe parents and carers should be invited in for a proper discussion and feedback session. I have spoken to many parents who have felt similarly disappointed, upset and frustrated over the lack of care and how condescending some of your team are. 

I sincerely hope you will take this on board and invite parents and carers in to discuss this as a matter of urgency. I feel like something really needs to change and I hope going forward it will, for all the new parents and disabled children who will follow. We need to work together to make this service as good as it can possibly be and that needs to start now.